The stigma of HIV still kills

December 1 is #WorldAisDay: HIV was discovered more than 30 years ago. Why do we still stigmatise HIV-infected people?

The morning sun had risen. The new year was
five days old. And then
Mthombeni Skosana*
took his last breath. It was
just after 5am on Monday January 5.
Unaware of the whispers of death in
Skosana’s shack, many of the inhabitants
of Munsieville, near Krugersdorp
in Gauteng, had started to
leave their dwellings to take public
transport to work.

Skosana’s illness was a deep secret;
only his wife knew what had killed
him. It was a chronic condition that
was treatable; the Munsieville clinic,
a 20-minute walk from Skosana’s
shack, provided free medicine, and
Skosana would have been able to
get a three-month supply at a time.
When it was in stock, that is.

Although the drugs wouldn’t have
cured him, they would have kept his
illness under control. They would
almost certainly have saved his life.
But the 33-year-old man was too
scared people would see him fetching
the pills.

The medicine is relatively easy to
administer – doctors often compare
the medication to diabetes treatment;
some even say Skosana’s condition
is easier to treat than diabetes
as it doesn’t involve a strict low-sugar
diet for the patient.

Silent killerBut inside her shack, next to her
husband’s body, Thabile Skosana*
knew her husband’s killer was not
like diabetes. People don’t think diabetics
are dirty or immoral. They’re
not carriers of a virus everyone fears.
Diabetics have a "normal" illness.
They can go and fetch their medication
without being condemned.

Part of the reason Mthombeni kept
his illness a secret was to protect
Thabile. She hasn’t contracted the
virus responsible for her husband’s
condition, but that doesn’t really
matter: she would face judgment
anyway, as the virus is mainly transmitted
through sex.

Stigma – the shame or disgrace
attached to what is regarded as
socially unacceptable – is something
the Skosanas had come to know intimately
since Mthombeni’s diagnosis
two years ago. To the Skosanas, the
fear of being branded different, and
being blamed for that difference, was
too much to face.

Mthombeni chose to stay without
treatment rather than be caught
out, despite his country having the
largest public sector treatment programme
for the condition he was
suffering from: HIV infection.

Stigma is rife South Africa’s National Aids
Council and the Human Sciences
Research Council published the
results of an HIV stigma index in
May for which they interviewed
more than 10 000 HIV-positive South
Africans.

One in three HIV-infected
people experienced discrimination,
such as verbal assaults, physical harassment
or being gossiped about.
Although this level of discrimination
is considered "moderate", the more
disturbing finding of the index lies
in what is referred to as "internalised
stigma": close to half of participants
infected with HIV reported that they
started to believe the negative things
those around them said or thought
about them and, as a result, withdrew
from society, avoided "health-based
interactions" and abandoned
planning for the future.

Internalised stigma prevented
Mthombeni Skosana from visiting
his clinic to get treatment. Of the
43% of HIV-infected participants
experiencing internalised stigma,
11% believed they should be punished
for their condition and another
11% became suicidal.

When we stigmatise people
infected with HIV, we literally spread
the virus and death. Studies have
repeatedly shown that, when HIV-infected
people take their antiretroviral
treatment correctly, their
viral loads, or the amount of virus
in their bodies, become suppressed
and it becomes almost impossible for
them to transmit the virus to others. If stigma prevents HIV-infected people
from getting on to treatment, the
virus is allowed to flourish.

Spreading the virusPeople who don’t know they are
infected with HIV would obviously
not know that they require
treatment. According to the latest
report by the Joint United Nations
Programme on HIV and Aids,
released this week, only 65% of
South Africans have been tested for
HIV. In other words, at least a third
of us have no idea whether we’ve
contracted HIV. If we allow stigma
to prevent us from getting (regularly)
tested for HIV, we may be spreading
the virus.

HIV-related stigma is by no
means restricted to South Africa –
Hollywood actor Charlie Sheen’s
recent announcement that he’s
HIV positive confirms that. Sheen,
an extremely wealthy person, only
revealed his status four years after
he was diagnosed and after he had
paid millions of dollars in blackmail
money to prevent sexual partners
from distributing pictures of his
treatment.

If Sheen was terrified of the stigma
he would face when the world discovered
his condition, how much
more frightened would a poor South
African from Munsieville be? It’s
often not only a fear of "outsiders".
Many HIV-infected South Africans
can’t even tell their family about
their condition.

Double lifeStigma also makes HIV-infected
people, even those on treatment
like Gloria Letaba*, live double
lives. Letaba collects her antiretroviral
treatment from Helen Joseph
Hospital in Auckland Park. She takes
her pills meticulously and has had a
suppressed viral load for three years.
But she can’t tell her employer; she’s
a domestic worker and is scared she
might lose her job.

Until recently, Letaba only had
to take off a morning once in three
months to collect her quarterly
supply of treatment. She could get
away with telling her employer
she was going for a dental or medical
checkup. But three months ago,
things changed: Helen Joseph ran
short of long-term antiretroviral
stock, and told her she had to collect
her treatment monthly until the
pharmacy sorted out the problem.

The HIV clinic’s queues started to
get longer, which meant Letaba had
to take off three-quarters of a day
of work each month. Her employer
started to ask questions. Fearful
of HIV-related stigma, Letaba
told her employer: "I have diabetes
and they’re running out of my
medication."

Diabetes, because she wouldn’t
lose her job because of it. Diabetes,
because her employer is unlikely to
think she brought the condition on
herself and "deserved what she got".

Aids is a mirror that reflects how
we think about society. It exposes
our prejudices and our lack of ability
to embrace diversity. The Aids
looking glass is telling us: although
we’ve made progress, we have a long
way to go towards breaking down
our bias – more than 30 years after
the discovery of HIV. It’s not the government’s
job alone to address HIV-related
stigma. We should start with
ourselves and our families.

In South Africa, where health
department figures show that close
to one in five adults is infected with
HIV, we’re all likely to know someone
with HIV.
Someone who is too scared to tell
us. Someone who isn’t Charlie Sheen.